TY - JOUR
T1 - Using routine data to improve palliative and end of life care
AU - Davies, Joanna M.
AU - Gao, Wei
AU - Sleeman, Katherine E.
AU - Lindsey, Katie
AU - Murtagh, Fliss E.
AU - Teno, Joan M.
AU - Deliens, Luc
AU - Wee, Bee
AU - Higginson, Irene J.
AU - Verne, Julia
PY - 2016/9/1
Y1 - 2016/9/1
N2 - Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.
AB - Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.
KW - Administrative data
KW - Death registration
KW - Hospital episode statistics
KW - Individual level health data
KW - Palliative and end of life care
KW - Routine data
UR - http://www.scopus.com/inward/record.url?scp=84986321970&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84986321970&partnerID=8YFLogxK
U2 - 10.1136/bmjspcare-2015-000994
DO - 10.1136/bmjspcare-2015-000994
M3 - Article
C2 - 26928173
AN - SCOPUS:84986321970
SN - 2045-435X
VL - 6
SP - 257
EP - 262
JO - BMJ Supportive and Palliative Care
JF - BMJ Supportive and Palliative Care
IS - 3
ER -